Kid's Wish Network, Hero of the Month!

So.... the news that I have been writing to tell you! Madison has been selected to be the Kids Wish Network Hero of the month for November. You can check them out at http://www.kidswishnetwork.org/ . How cool is that!!!

We have also been contacted about Madison being a feature in a magazine that goes out to thousands about Cincinnati Children's Hospital. They are talking about the February issue.... and lastly they would like our family to be interviewed by a local radio station so that our story can be played during the yearly fundraising drive on the big local station. The hospital is so impressed with our story of a 3 year battle with no help and then our excitement in finding their info over the Internet. We could be Dr. Levitt's biggest advocates in the world. He has changed Madison's life forever! Yesterday after surgery I could not help but give him a great big thank you hug!

So... Little Madison could be getting some real recognition in the next year for her courage and her fight against this miserable colon disease. She deserves every ounce of it!

Nik

better days.....

sisters reunited so excited
craft- time
jed playing catch-up!

Yesterday evening seemed to be one of much less pain for Mads. She has even smiled a few times this morning. Today they will try to ween her off of some of the narcotics. They can tell that she is getting gas build up from the pain meds... We need to make sure that her colon is clear for the x-ray day 6 or she will not be allowed to attempt eating. The pain team said that as they take the meds down she will be pretty miserable from post op gas pain but that the only way to get the colon moving is to drop of the narcotics..one of those issues where it has to get worse before it can get better. Pray that her pain is manageable.





Ted and Danielle came with miss Olivia last night. The girls were so sweet together. They painted in bed together. Olivia was so sweet and said " i wish I was the bigger sister so that i could hold Maddie because that would make her feel better".





I went to the hotel last night and slept with Olivia. I got a good solid nine hours sleep so that was a huge blessing. Jed is snoozing after a shorter night here with Maddie. He will take a turn at the hotel tonight.




Thanks for your continued prayers,

Nikki

first night post-op

trying to get a little rest

trying to keep her distracted with some games.

Maddie and Glenn beat Jed!

an attempt at the playroom....can you see the enthusiasm!!

hello.... as I type my eyes are heavy! 2-3 hours of sleep just does not cut it! Madison is finally sleeping - it is 5PM here. The first time that she has closed her eyes since her very short night last night. We have been having some awful issues with pain control since surgery. at about 2AM last night they added Valium to the list of narcotics on top of the morphine pump. seemed to take some of the edge off when trying to work with her. She again stopped talking for quite sometime yesterday...it must be her new way of coping. After the pain was under control and we had just fallen asleep at 3AM we started having issues with her breathing. Because of the meds her breathing is shallow and makes all of the alarms sound. She was moved and rolled and messed with for about an hour...still no luck so she had to do some breathing exercises....nothing like being totally annoyed, drugged out and tired and then asked to exercise!!!



Finally at 5AM I saw her eyes close as she drifted off. The Dr. started rounds at about 6AM and she never really got good sleep again until now. This morning she was miserable. Had to have the pain team come and see her...changed all of her meds moved her catheter (which seemed to be a major factor in the pain level) and she is seeming allot more comfortable.



You can hear her stomach growl across the room. the nurses chuckle because when they listen to her chest they can not hear it clear because of all the stomach noise. She has not asked for food or drink since last night which also indicated to me the level of pain she had. the "liquid meat and potatoes" should be here in the next hour and they hope that by tomorrow the feeling of hunger should be gone.



We tried to take a small walk to the activity center today..lasted about 5 minutes. You can tell from the pics that she is out of it~ we will try again tomorrow.



Dr. Levitt brought the pictures.... I was expecting to see pictures of the colon in a sterile tub -Oh no.... he gave us 8x10 pics of the surgery in PROGRESS with the colon on the table - still attached. Jed looked a little queezie. Nothing that I will share with others or scrapbook but definitely interesting for the huge medical file drawer at home. Maybe someday she will want to see them.....not for years - by then the memories may not be so fresh. ( all you nurses that are reading this and praying that I will let you see them - the answer is .....YES but only you guys...!)



Danielle and Ted are on there way here with Olivia!!! YEAH. I am excited to see her. The will stay until Sat or Sun depending on how Maddie feels. It will be nice to have some other support her and allow me and Jed to actually go have a meal together! We have been alternating since we do not want food or drinks in here. Madison is excited to show Olivia all the cool things around here.



I have a few other REALLY COOL things to blog about....stay tuned. Hint: Mads may be a celebrity!



Love you all!

Nikki

the details....

Maddie & dad get a few last snuggles before surgery.

A few more prayers for my sweet girl after a sleepless night

up in the room with all her "freinds" trying to recover !

Wow...what a day. Madison is in bed and resting now which is all that really matters.

This morning Madison was taking down to surgery at 7:45. we talked with Dr about what was best for her pain management and it was decided that we would do basic general anesthetic if the surgery was able to be done trans-rectally( all incisions through rectum and not belly). If it was decided that she would need to be opened though the belly as well an epidural would be put in place for her pain management post op. After signing all of the consents and talking with Dr. levitt she was rolled away. We were able to go all the way to the operating room with her and say our goodbyes there. They gave her some meds to relax her about 10 minutes before the goodbyes so that that would not be scary. It worked (for her anyway!).....she was giggling as they rolled her in....Jed and I were crying!



Surgery lasted almost 5 hours. It was a long wait! I am so thankful that we had two great surprises during our wait:

1- Jed's Friend, Scott Walker from Cedarville University informed his dad, Dick Walker that we were going to be here. Dick is the activities director at Cedarville which is just a few hours away from here. He happened to know a pastor who is now the Chaplain at a hospital right down the street...after all of the connections were made he stopped up to encourage us mid way through our wait. It was a great surprise.



2- in a moment of pacing the waiting room I turned the corner and my aunt Madeline and uncle Glenn from Akron where standing there. They had driven the 4 hours to be with us. i saw Madeline and just started crying....It was great to have them there for the final 2 hours as it made it go MUCH faster! Thanks Hansen's for your thoughtfulness!!! Jed is out with them right now eating a good dinner!



Dr Levitt sat with us and talked for quite awhile after surgery. He ended up taking about 25%-30% of her colon if Jed and my calculations are correct. He took lots of picture and will bring those around for us tomorrow to see. He said that it is "quite impressive". They also removed the entire rectum. He was able to do everything trans rectal.



Recovery is going to be rough. NO FOOD,ICE, WATER, or even a good ol' tooth brushing for at least 7 days. At day 6 an x-ray will be taken to see if gas is moving through the colon, if so liquids will be started on day 7. If not we will wait a few more days. Madison is already asking for food tonight and it is KILLING me. The unfortunate thing is that she has already been on a liquid diet for 3 days but was so sick and throwing up that she did not want anything. They will not start her TPN & Lipids until tomorrow. I am trying to get them to start those tonight so that she may not be so hungry tomorrow. the nurse said they probably will not allow it until tomorrow. They say that she will probably feel hungry for at least another day after it is started.......... pray that this sweet girl is not miserable!



Thanks so much for all of your prayers! It is so appreciated. I will blog more in the next days the details of the road ahead for us the next few months as Dr. Levitt explained today...still a ways to go to get to the end results that we need but the BIGGIE is finally behind us! Thanks for your prayers....you have no idea what it means to me and Jed!



love ya,

nikki

I can breathe now...

Just got to our room from surgery. I will write details later but wanted you all to know the she came through surgery well. It was a long surgery and an even longer day.
I will fill in the important stuff soon! Thanks for the prayers and PLEASE continue. Madison is really uncomfortable.
Nikki

the big day

Madison is still sleeping She had a great night sleep.... I gave her a massage at 9 and she was OUT! I have not seen her move since then. It is 6:30 so any time they may come get her. I am going to go snuggle in next to her and wait. I slept ok - probably got about 4 good solid hours. My mind has been racing since 4AM.... Lots of time to pray.... Jed should be here any minute. Hopefully he got good rest!

We will keep you posted - I do not want to waste the last few minutes I have to love on her....
talk soon
nikki

Farewell Megacolon, Farewell !!

Finally was able to get the pic of the colon that was so impressive on the computer to share with you all. This is the contrast enema that was done here at Cincinnati Children's Hospital when we first visited. It is the first picture that made Jed and I have the "ahh ha moment" as to why this sweet little girl has so many issues. The lower part that is all lit up is what will be removed. Dr. Levitt said that it is probably 70% of the width of her body when impacted.

I asked the Dr.s if I can see her colon when it is out and they agreed to take pics of it for me....may seem crazy but I would love to see this "thing" that has caused my child so much agony!

Lights out... its gonna be a big day tomorrow!

Pray on friends, pray on!